In the last few months I have tried many times to publish a blog, as you will have gathered, to no avail. The longer time has gone on, the more it has become clear to me that I just cannot continue. Since treatment has stopped the harder it has become to carry out basic tasks, including typing on a normal keyboard. For reasons yet to be discovered, one of the most debilitating side effects has been muscle cramps, not only has it stopped me driving, but more importantly even the task of spreading my fingers to use a keyboard is enough to send the muscles in my hands into spasm. There is no doubt that my health is rapidly deteriorating, and that will continue in the forthcoming weeks, and hopefully months. I will try to post medical updates when I can, but for the time being at least, MY BLOG ENDETH HERE.

I would like to thank the thousands of people who have read my blog, and the many who have taken the time to contact me, or just leave a comment. I would never have guessed when starting out, that it would impact on so many, and I hope, helped those of you who have been touched by bowel cancer since I began. Remember, despite my own experiences Bowel Cancer is 100% curable if caught early.

For the time being, ciao, adios and all those other cliché words, it’s goodbye from him xx xx xx

I thought I might try and bang one out while I can, despite battling with a keyboard that has been bathed in orange juice (with bits !). In a way it’s slowed me down which is good because I don’t usually look at what I’m typing, nor the fact that my hand has been skimming over the touch pad and the cursor is never where I expect it to be. That may explain why you might often see an odd piece of text randomly inserted into the text of my blog. It also shows I hardly ever proof read.

I’ll say this quickly, I’m reasonably well. I’ve had to revert to self inflicted diarrhoea, but it’s better than the alternative of constant constipation and the resulting pain from it. My weight has rocketed, that concerns me for the first time. I had to go into town to buy new trousers, I don’t have any that fit me any more, can’t do the waistline up. I’m so bloated I feel like a Mr. Men man. Can you be a Mr. Men Man? Which one would you be. I think I would have to be Mr. Tickle, that’s the one I remember to always end up reading to the kids. Anyway, waistlines, I’m sure it’s worse for men. Anyone who has a stoma knows how important it’s position is, you have to take this into account when buying trousers (or pants as they say oop ‘ere). It’s worse with Jeans. I can hear the crowd of women stoma patients running towards me in anger…of course it’s no worse for men, just different. Anyway, I seem to have achieved an acceptable balance with pain relief and it’s associated side effects. Apart from the dexamethasone (steroids) making me eat like a horse and preventing me sleeping, pain is under control.

Having no treatment for the cancer itself any more make me a little more conscious that the tumours are likely to be growing. Yes I’ve been feeling the side effects of some of this (pain), I can now definitely feel the main growth on my liver without any prodding. It’s just there, stuck in the middle of my chest. It’s not painful, tender if it’s pressed that’s all, but it’s there. I had been hopeful of being included on a drugs trial. That’s not going to happen. The blood clot I had in my liver, and the need to inject myself with blood thinning drugs prevents me for inclusion. From a selfish point of view I’m not that bothered, it was a blind placebo trial which meant I would only have a 50% chance of getting the drug in the first in place, but I’d have been happy to take part. That was what is known as a Phase II trial. Having spoken to the research nurse the other day, she will now get together with all other parties concerned and look at the possibility of being included on a Phase I trial.

I have every confidence that my research team wouldn’t put me through if they didn’t think there was the chance of a benefit to me. I’m not even sure I would want to proceed, even if there was a chance of shrinking the tumours. Having been so ill with side effects from my last regime, I wouldn’t want to go through the same again for just few extra weeks. Quality not quantity. It’s not even certain I’ll be well enough or suitable for a phase I trial, but at the moment it’s the only chance I have of any further treatment. Cancer isn’t just chemo/cure. Choice is good, but choice can be complex and complicated too.

I’ve been thinking of acts I never got to see at Glastonbury, there are hundreds of course, but I mean acts I might have wanted to see, or opted not to do so. Blur will always go down as one I missed, but there aren’t many. I wasn’t busting a gut to see Bono, Primal Scream was always going to be the better option. One I didn’t see on the pyramid stage was Bruce Springsteen. I don’t know what else I was watching, and I’m not going to check as it might make me slightly more disappointed. I’m not his biggest fan, but a great admirer. I’ve seen him live before and he’s more than value for money, I’m sure he’d play all night if he could. Anyway, it’s good enough excuse to include a video from Brucie in my blog. I love this song, hope you enjoy it too.

The first photograph, I’ve no idea where it was taken, probably about 15 years ago, and shows Lewis surrounded by girls. Look at the smile on his face. Alana is on the far left in pink. The second, just a couple of years ago. What makes me happy is to see them happy together, and if I could wish for anything after I am gone is that they maintain a close and loving relationship. They do both love each other very much, and I want them to know they will be there for each other whenever they are needed.

This blog was supposed to be getting easier, just a few words, music and photos, but such is the nature of cancer, it’s not going to let me. I should’ve kept my mouth shut saying everything seemed to be settling down.

I had thought that pain was under control last time I reported, but it turned out nothing could be further from the truth. I hope we have at last found the main cause of it, but at the time of writing I reserve judgement as to whether we have beaten it. Notice the “we”, there are certainly many trying. I’ve been backwards and forward to The Christie to see the oncologist, the palliative care team at The Christie, Jackie the Macmillan nurse, and the palliative doctor at the local hospice. I can’t say they aren’t trying between them. I’ve been propped up with a mass of pillows in bed, having to try and sleep upright, something I’ve been failing to do until the welcome arrival of diazepam. Painkillers have been at maximum level, and despite all the above, the only thing that seems to be working are steroids. To understand you need to know what’s going on inside. The main tumour (the one wrapped around the portal vein) is now the size of a whole nut, and sitting flat bang in the centre of my chest, just under the ribs. My liver has regenerated on the opposite side it would normally be. The worst side effect of any powerful analgesic is constipation and my bowel seems to have stopped working, and as a result causing pressure upwards on the liver, which in turn is forced upwards into my lung, where another tumour is waiting to cause me pain as it presses into the tissue of my lung. It is this that is causing my pain, and previous inability to sleep. The steroids are very effective in reducing the inflammation on my lung, but it’s finding an acceptable level of steroid, the aim is to find the lowest dose possible, so as to keep the many side effects to a minimum. So far a quick boost has always worked initially, but as soon as the dose is reduced the pain returns. Last week I turned up at clinic and almost immediately they wanted to admit me. So after 48 hours in hospital, another steroid boost, I’m relatively pain free, but have to start to reduce the steroids in a few days. We’ll see what happens then.

As well as all that I’ve been inundated with visitors, most notably Alana a few weeks ago, and Lew and Kirsty last week. Sadly I wasn’t really well enough to participate much in Lew’s visit, but it was still good to seem them, and it’s always a delight to see my darling daughter. I apologise to the others I’ve had to cancel at the last minute due to not being well. At least we got to see the fireworks ! It served as a reminder that Bonfire night marked 12 months since my last liver surgery that started the downward spiral I now find myself on. Oh, and an opportunity for a photo. A couple from the garden also, roses in November are always nice, and a night shot showing my grotto. I’m about to start cleaning up and giving a fresh coat of paint to a couple of garden gnomes, pictures to follow. (uploading problems- photos to follow)

And music. More of a request this time, chosen by Jenny and proudly included by myself in recognition of Jenny, Steve and Tom’s great effort in the BUPA Great Birmingham Run and with gift aid, the £463.75 raised for Beating Bowel Cancer. Thank you so much for all the donations, and kind comments left on the Just Giving page.

We’ll begin with the music today shall we, and not a favourite band of mine, Red Hot Chilli Peppers. They have a bit of a reputation for being a bit flat live. To be fair, I’ve only seen them twice, and, turned out to be one of the worst and best nights of my life. The first time the audience weren’t interested, and so after about 5 numbers, the band decided they were just going to play through their set and get off. The second occasion was just so different. The crowd were up for it, we were certainly up for it. I vowed never to see them live again,so as not to spoil the memory, not something I’ve found hard to keep to. But that’s not the reason I chose this track. I was sitting in the garden one summers day, just pottering, as Dads do. Alana was with me, she would be about 6 at the time. She loved being outside in the garden, either on her own or one of us, she always found something to do, keep herself happy.

Lewis was in his bedroom, which overlooked the garden, all his windows open, it was that sort of hot afternoon. ‘Under the Bridge’ has such a recognisable opening, it began drifting out of Lewis’ window, and I began singing the opening lines. I waited for the cymbals to tap in, they didn’t and it was then that I realised I was singing on my own, not along to the record that I thought I was listening to. It was Lewis playing, and I think it was that moment that I knew he had finally got it. He’d been playing guitar for a few months, he could pretty much play most things, but there’s a huge difference between playing a tune and being able to play. The sound coming from his bedroom window had clarity, tone and feeling, and I for one could not tell the difference between his playing and the real thing. He’s never looked back since, even though his instrument of choice now is the Bass which pleases me more than anything. He’s a natural.

The photo is from a little guitar shop, stuck down an alley in the middle of Exeter. You wouldn’t just come across it by accident, you would have to be seeking it out. Manson’s is a bespoke guitar maker, and if you get your guitars bespoke, they don’t come cheap. Strictly speaking, the guitars are made elsewhere, but this was the retail outlet for Manson’s and we had driven from Sussex as a treat for Lew, for Manson’s were the craftsmen who made guitars for Lew’s hero Matt Bellamy (Sorry @pmf182 ) from Muse. Bellamy likes his gadgets, and Manson’s are more than pleased to build his little toys into the body of his guitars, a quick look at their website will show you what I mean.

It isn’t just Bellamy who holds Manson’s in such high regard, the walls of the, the workshop are adorned with broken guitars from guitar heroes past and present, John Paul Jones, Ronnie Wood, Brian Jones, Hendrix, Jeff Beck, to name just a few. We spent hours at the shop, and the staff allowed Lewis to play whatever Guitars he wanted, and as you can see, had a multitude of amps to plug into and effect pedals to play with. The store has now moved to larger premises around the corner- we’ve not be there yet, maybe one for the bucket list.

I’m pleased to say Team Hagues all finished the BUPA Great Birmingham run, and so far have raised £365 for Beating Bowel Cancer.. There’s still time to make a donation here. https://www.justgiving.com/jenny-hagues1

May I say a very genuine and heartfelt thank you to those of you who have made donations this year. Some of you I have not even met. You really are remarkable people and I thank you from the bottom of my heart.

Everything seems to have settled down now health wise. For the majority of the time my pain is under control. I don’t think the fatigue will ever leave me now. I can’t begin to describe the effect it has on my life, and the terrible feeling of having no strength, it’s like my body is being switched off. The good news is that my scan came back as clear, the cancer has not progressed to my bones. I suppose that’s the first positive news for a long time. So for the moment all is calm. I’m back at The Christie later this week, chest x-ray this time. I’ve been having a bit of breathlessness so they’re just checking things out. Other than that, no treatment for the time being, still hopeful of a trial. The number of tablets I take daily seems to have reached ridiculous levels again, but at least they’re working. It is getting harder to keep track of what I should be taking I can easily understand how some people overdose or miss a dose completely. I have a 7 day pill container but you still have to remember what goes in them in the first place.

I’m back to my CD’s now, onwards with the death list. Trying to listen to everything I own, all revoking memories. Not even got near MP3’s, I suppose I should be grateful I don’t have to work my way through a pile of vinyl !

I suppose if I’d have given it any thought I could have predicted it would happen. Not the timing though, that was completely unexpected. I’d had a crap day, but it wasn’t that bad. Nothing that would leave me in floods of tears for the best part of an hour. The day started with a visit to the local hospital fracture clinic, 08.45am. I mentioned the dislocated thumb a while ago, and it’s still ongoing. I’ll explain later, because I need to put the day into context, not talk about the crumbled bones in the thumb. So I’d been to the hospital, satisfactory outcome and breakfast at Sainsbury. Then the reminder that I’d had bowel cancer. My bowel may now be the healthiest part of my body, cancer free, but it’s still been hacked about, twisted and looped around to exit on my belly. Let’s just say we had a major malfunction.

So although I was ready to go out for my second hospital appointment of the day, I had to shower, change, put the washer on etc. etc. All things I could do without. I arrived at The Christie for my MRI scan, exhausted. I could not get comfortable on hard table I had to lay on as it zoomed in and out of the scanner. Twice the radiologist had to repeat the scan as I’d moved part way through. Then the drive home around the M60 in rush hour.

I arrived home early evening and put the following tune on and immediately burst into tears. No matter how many times I tried to stop I couldn’t, even though I thought to myself, there’s no reason, I was laughing in between the tears at the stupidity of the situation as I sobbed and sobbed for half an hour. When I eventually stopped I just sat and carried on with the music, as if nothing had happened. I spoke to M on the phone who, as usual, put everything right. The realisation of what is happening has hit home. I can’t cope with the pace, and my body is giving in. The concoction of drugs I’m now taking is also playing havoc with my body and at times mind. And so it was a song that made me cry. Ha Ha, as if it was as easy as that. There was no particular reason, it was just “it” and I hate it.

I couldn’t leave the song out now could I. The Broken Family Band, sadly now disbanded. This wasn’t the exact video I was watching/listening to, it was the original that went with the song when released, but I chose this one because of its association with the TV series Skins. The song was playing in the final scenes of the last episode of series one. The early series were, in my opinion the best television for years, but sadly I think it’s lost its way now. Series one was by far the best, superb writing and acting and stars in the making with Nicholas Hoult, Dev Patel, Joseph Dempsie. It’s hard to believe it’s seven years ago now. Oh, and the song, I just love it, so simple yet powerful. The video I’ve chosen combines scenes from Skins series one. Enjoy !

Now to the thumb. I had better explain. Lewis and Kirsty were visiting for a few days, and we decided to go out and fly a kite. That’s what Dads do with their kids on a Sunday afternoon isn’t it? Lew reminded me it was twenty years ago we last did it, Portland Bill. It was very windy, not that it contributed to the stumble that saw me on the grass falling backward. What

I should have done was let go of my stick. I didn’t and my thumb was dislocated backward, at right angles to where it should be. It hurt, lots. Luckily the local hospital was just down the road, so off we went hoping to get my thumb put back into place. Nobody in the waiting room so straight in, x-ray, pulled back in place and off you go. Six weeks later it was still swollen, I couldn’t bend it, and the majority of opinion suggested I should go back to the hospital.

Didn’t they put a splint on it?

No

Didn’t they give you an appointment to go to the fracture clinic

No

Didn’t they tell you to go and see you GP

No

I got the impression I wasn’t giving the right answers. It was left that that the doctor I saw would discuss with his colleagues and let me know if there was anything they could do. I was eventually sent an appointment to go to the fracture clinic, where I was told, because I didn’t come back earlier, the thumb is still dislocated, and the joint has started to set as calcium settles around the joint. I need an operation to put it right, with a pin in through the knuckle for four months. Err no I don’t think so, my lung problems rule out any anaesthetic, the thought of a total arm block was tempting, but is there really any point in me undergoing the discomfort of a pin in my thumb for 16 weeks – NO thank you. So I’ve been left with a mega splint to hold my dislocated thumb in position. Makes me look like Robocop (apparently).

I’m taking valium to try and give me some sleep during the night.I have to say it’s working but it does have a detrimental effect during the day. I’m finding it very difficult to find the energy to do anything. Steroids to counterbalance don’t seem to be having any effect. I don’t know whether things are getting harder, sooner than I expected, or am I just imagining it. That can’t be the case, why would I imagine feeling so tired…I’m exhausted and every muscle in body aches with the slightest exertion, and I’m breathless with every move. I should have been in Birmingham today to see Jenny & Co in the Birmingham Great Run. I had to pull out last night, and I’m glad I did, although do feel guilty at letting them down, but seriously, I had no chance of making it there. Thank you for your donations, great to see the total doubled. I know there is a lot of outside sponsorship, I’ll let you know the final total when it’s all in. You can still make a donation here

Two hospital appointments this week. First, Dr.S, oncologist. He will have the results from the MRI scan, decision time, radiotherapy or not. Then Thursday, Mr. S, colorectal surgeon. Just a routine 6 monthly check up. I think he wants to do a colonoscopy, but I can’t see the point now.

And so to the photo, T in the Park , year not known…I would guess 04 or 05. Not a lot I can say really, when you see a shot like that you just have to take it.

Footnote : Linda Bellingham died from advanced bowel cancer yesterday, her death was announced this morning. Spread to her liver and lungs, she decided to stop chemotherapy in favour of a better quality of life. Nothing unusual, she died of bowel cancer because she didn’t catch it early enough. She was diagnosed July 2013. RIP. Don’t’ let it be you !

There’s no stopping me now, I’m on a roll. After a couple of months silence I’m out to make up for lost time…or time I haven’t got maybe. I’ve made an executive decision also, all future blog entries will be accompanied by a You Tube Video, and a photo (maybe one or two) from my archives. Just something to mark my life. I’ve got thousands of photos so it could take a while 😉

I’d like to begin with a big thank you following my appeal for Jenny’s forthcoming sponsored run in The BUPA Great Birmingham Run. Already the (modest) target has been reached. No sooner had I started it off with twenty quid, other soon followed, accompanied by some lovely comments. I can’t thank you enough, but please, keep it coming, do it for Beating Bowel Cancer. You can make a donation here.

Earlier in the week I took one of my favourite drives over the top of the Derbyshire Dales. Leaving from my home on the edge of Saddleworth I can be in my county of birth, Derbyshire, within just a few miles. From Glossop to beautiful Buxton, then the long A515 Roman road down across the Dales to Derby, where my Dad lives. Unfortunately the weather was not for sightseeing, it was torrential rain that made th. drive extremely difficult and dangerous. The last time I drove this route was to Y-Not Festival, oh yes, and the rain was torrential. It wasn’t a visit I was looking forward to anyway, Dad suffers from vascular dementia, which makes it extremely difficult for him to understand or remember things. I had already pre-warned him and Marian, his partner of twenty years plus, of what I was about to tell them. I had been putting it off, but in the end I knew how I would feel not being told had it been Lewis keeping details from me in similar circumstances. As a father he had a right to know. Marian knew, I made sure she was aware before I spoke to Dad, and I had phoned earlier to let them know I was on the way and give Marian enough time to get the Birds cakes in. Marian is almost offended if you don’t have a Birds cream cake when you visit. Birds is the local bakery that has somehow become legendary in the area. I do have fond memories of early morning Christmas Eve’s, my Dad and I driving into town at the crack of dawn to stock up on pork pies, but other than that I don’t really like their cakes. I began by going over the chemotherapy I had begun and stopped, trying to explain the reasons why, and how my scans had revealed further spread of the disease. Despite the fact that he had visited me at The Christie when I had initial surgery to remove the primary tumour, he had no idea. “What is it that’s wrong with you?”. “Why can’t they operate?”. “So how long have you been ill?”. Time and time again I went over the same information, and time and again Dad came back with the same questions I had answered just minutes before. After an hour of going over the same details, between us Marian and I decided that perhaps it was best not to tell him that my diagnosis was now terminal. I think Marian decided he could cope better not knowing. I had to respect her wishes, she lives with him day to day, and she had to deal with the consequences. I had tried to explain most of what was happening, but as he had no recollection of me having been ill in the first place, it was becoming increasingly difficult for him to understand. I left after a couple of hours, laden with all the cakes, sausage rolls and pork pie that hadn’t been eaten. In fact the only thing that had been consumed was a small wedge of egg custard I had eaten to be polite. I headed home on the reverse journey, where at least the sinking autumn sun was creating stunning colours as it peeked over the dark clouds sitting on the horizon, casting rainbows from Carsington water to Dovedale. Marian phoned almost as soon as I got home. Dad couldn’t even remember I had been !

OK, so here we go. I’m going to enjoy this bit because it’s all about me me me. I’m allowed to be self indulgent aren’t I…a retrospective look at the life of… I’ll start with video. It’s been too long since I concentrated on music, so I’m going to try and take a look back at music and bands that have been influential to me. I’ll start with Muse, who will always make it into my top ten.”Who’s your favourite band?” I can’t ever answer that question, but Muse will be one that always gets a mention. I was introduced to them by Lewis, I remember the day well. We had been to buy a guitar from an old lady who lived in the middle of nowhere. We were buying it for the case, but the guitar was equally good. When we got there the lady told us the history behind it, and how her late husband had been in a country & western band. She told us she had lots more “stuff” and led us to an outbuilding filled with instruments and amplifiers. It was an amazing collection amassed over years. All beside the point. Driving home with the car full of musical stuff, Lew asked if he could put his latest CD on It was Muse – Showbiz. It was loud, angry, dangerous, complicated, aggressive, it blew me away. Forget anything like Black Holes & Revelations or Absolution. If that’s all you know about Muse then listen to their first two albums, Showbiz and Origins of Symmetry. We followed them wherever we could from then on, and at that time it was still small venues, a few hundred people, it was amazing. Years later they headlined the Pyramid stage at Glastonbury, I was so looking forward to seeing them. M and I were in the middle of it, right in the centre of the crowd. The music started as the three of them took to the stage, the crowd went wild…and M collapsed on the floor. She was out for the count, white as a sheet and I was panicking trying to bring her to consciousness. I really thought she was dying. She did eventually come round but it seemed like ages, and I had to get her out of the crowd to some fresh air. I don’t know how I did that as I virtually had to carry her as I cleared Muse fans going wild every step of the way. I did get her out though, and we headed back to the tent. I was disappointed yes, but they were also headlining one of the stages at T in The Park a week later. That Scottish rite of passage festival, for which we had tickets. The video is from that Scottish performance.

T in the Park was always very special to me even though I only went for three or four consecutive years. The first, 2003, I was working, I was among a group of three or four of us, writing reviews and doing interviews, so it was quite busy, and somehow M had tagged along without a ticket, with the other three who had travelled together. I had driven up on my own as I was working in Edinburgh the following Monday. Somehow M and I got together over the weekend and as they say, the rest is history. This video was 2004, from what I remember, a memorable weekend. As well as the significance of Muse, the video is also a great showcase for Dads Flag, which was now becoming well established on the festival circuit. It had started a couple of years earlier as a vehicle for Lewis to be able to find me in the large crowds. He was still relatively young and I wanted him to have some freedom to do what he wanted at festivals (within reason) whilst at the same time to be able to find me whenever he wanted. What better than a large flag with DAD on it. It didn’t take long for the flag in it’s various guises to become legendary, and it accompanied me to every festival for many years afterwards regardless of whether Lewis was there or not. People would come up to me to introduce themselves or have their photo taken with DADS FLAG, it became quite an icon and can be seen on hundreds of videos to this day. Unfortunately it had it’s down side as people realised they could get on TV if they took a flag in front of the stage, and eventually flags became the burden of live festival performances. I stopped taking the flag sometime in the mid noughties when I realised the monster I had unchained. Pick a video from Glastonbury/Reading/T in tn the Park in the early noughties and you might see half a dozen flags, do the same today and there are hundreds, ruining the view of the thousands standing behind them. I’m sorry I was one of those who started it and regret it to this day.

On the health front there is little to report although that doesn’t mean lack of activity. The wheels have been turning in the background to put everything in place. I have a date for the MRI bone scan and follow up appointment with oncologist Dr S. It’s been difficult to arrange the two to coincide with Dr S being available. It’s reassuring to have such a senior oncologist looking after me, but it goes with the drawback of his limited availability as his presence is required around the world, but we’ve got there in the end. I’ve also seen the Macmillan nurse, and talked through those difficult things that have to be addressed. In particular we’ve talked about the final days and our local hospice, Dr Kershaws. Now that the palliative team are taking over management of pain control, different methods are being considered. One of the first things prescribed is valium. I’ve not been sleeping which has been difficult, but they think, and I hope valium will help. It’s not a drug that is widely prescribed nowadays due to it’s highly addictive elements, but obviously this is no longer a concern. I’m hoping that balanced with steroids and morphine it will do the trick. My drugs box is becoming fuller and fuller, and my chemist is rubbing his hands.

The photo, me and my lovely children. I would say that wouldn’t I. Taken on the sea front where Lew and Alana live. Goring-by-Sea to be precise, September 2012, 12 months after diagnosis, one major bowel op and mid chemo. It was a hot sunny evening and we had lots of fun and laughter trying to get the photo right. I’m proud of the end result.

I’m not sure you can really, it all seems a little over dramatic to me, life goes on as it did before. Once I had spoken to everyone who needed to be spoken to, everything went back to the normal daily schedule. I’ve not quite found the phrase I’m comfortable with, but I’m in some sort of state of calm. I’m not afraid, scared, worried or even concerned at the possibility of anything happening at the moment, yet at the same time well aware of how things can change so dramatically in a short period of time. I’ve started to put my mind to all the things I need to organise, some of which you would never imagine yourself having to consider. There are the obvious formal affairs that need to be in order, and then the trivial like arranging your own funeral. I had a moment, driving to The Christie the other week when something on the radio sparked an emotional lapse, that in the end resulted in heaps of laughter. I wouldn’t hesitate in putting Radiohead among my favourite bands that always make my top ten, but for funeral music ? No way ! Anyone dissecting the lyrics would jump to ‘the conclusion I had gone stark raving mad. Anyone who knows me would appreciate the thought of The Smiths blurting out “Heaven Knows I’m Miserable Now”, the thought of that playing as the curtains pulled shut filled me with laughter. But would I want anyone going away with the thought of me possibly being a fan of Mr Morrissey…God no. So, I’m still working on the music.

I’ve been moved by the messages I’ve received from relatives and strangers, particularly those offers of help. The garden is now ready for winter thanks to a number of people, and M put in early spring bulbs just the other week. We’ll be adding more over the coming weeks, but I’m determined to see those ‘early’ bulbs blossom. The Macmillan Nurse tells me it’s good to have targets, but maybe spring flowers is a bit ambitious. She suggested Christmas as a starter. Wow, I’ve never looked forward to Christmas. I’m gradually working myself through the other things. The wardrobe needed a good clear out, but what am I going to with 12 pairs of jeans, and shoes ! How did I get to need so many pairs? I never knew I had a shoe fetish. You can see I’m concentrating on the important things. I keep hearing new music on the radio and thinking to myself ‘I must buy that’, then it dawns on me that there is little point. I’ve already got a couple of hundred CD’s to find a home for.(Don’t worry, I’ve already had plenty of offers of a good home). Both Lewis and, Alana are coming to visit in the coming weeks, which will give me ample time to prepare myself for what is the hardest part of all this. Lewis was here just a few weeks ago, but I’m ashamed to say it’s been ages since I’ve seen Alana. I can’t trust myself to make long drive down there when I can fall asleep at the drop of a hat, and even fitting in a train journey has been difficult when you have so many hospital appointments. Lame excuses I know. Alana has just turned 21, and just started her final year studying English at The University of Sussex. It makes me smile when I think of her as a young girl, so happy in her own little world, but lacking confidence and so shy when out of her comfort zone. I can’t claim any credit that she has turned in to the intelligent, confident beautiful young lady that she has, but I’m so proud of her. It does hurt me to know I won’t see either of them get married and I won’t see my grandchildren. I wasn’t ready yet, but I would have made a super cool grandad. And before you start saying “there’s plenty of time” , no thanks, let’s leave it until they’re ready, I’ll be happy with that and they’ll both make great parents.

Sunday I was up bright and early, which is usual on the first Sunday in October as it was Glastonbury ticket sale day, but there will be no Glasto for me next year. I had already decided that before I left Worthy Farm in June, and now the decision is out of my hands. There were a couple of times earlier this year when I didn’t think I would make it at all, so I was pleased just to be able to be there, and will always be grateful to those that made it possible, no-one more so than M who hardly let me lift a finger all summer. In the end it wasn’t as significant an event as I had let myself believe it would be, and I reached the conclusion that perhaps I had been building up to for a couple of years prior, I have gone full circle and reached the end of line with Glastonbury. Things will always evolve and change and I have fully embraced those many many changes over the years, but it’s no longer the festival I lived and breathed. The people are different, the atmosphere was different, the edge has gone blunt ! Don’t get me wrong, it’s still the best festival in the world, and I would still encourage anyone to experience the full force of Glastonbury Festival. There’s still nothing like it, and it will always be the single biggest influence on my life. I’m delighted that Lew and Kirsty managed to get tickets before they sold out, within 28 minutes. I’m so pleased that Lew is going, it will be the first time he will have been when I’ve not been there. I first took him in 2000 as a young boy and he fell in love with the place instantly. I can’t forsee what will be the by the time the festival comes round next June, but I guess it will be an emotional event for him. Don’t worry, it won’t be the first festival he’s been to without me, he’d done that by the time he was 15, and it won’t be long before he surpasses the total number of festivals I’ve been to.

To end this, I want to make plea on behalf of my sister In law Jenny. She is a keen runner, 10k, 5k, half marathon etc., and for the last few years she (and now my brother Steve and nephew Tom) has done so raising money for the charity Beating Bowel Cancer. I know every penny counts, but Jenny is well aware of charity appeal burn out, and has veered away from putting pressure on friends, work colleagues etc, when seeking sponsorship, yet continues to run events raising whatever little she can, time and time again. I refuse to be critical of this, we all know what it’s like, appeals for this and that, sponsored walks, climbs, diets blah blah blah…we DO get sick of it. I’ll be going down to Birmingham to cheer them over them over the finish line in the BUPA Great Birmingham run on October 19th, and as it’s more the last one I’ll be there, it would be great if we could amass a bit of money in recognition of their tremendous efforts, and benefit Beating Bowel Cancer. It’s hard to convey the great work BBC do. Unfortunately it’s not the kind of website most of us visit unless we are directly affected by the disease, but it has been of great help and support to me over the last three years. They have been there when I have needed someone to scream at over the telephone. I have made, and lost, many friends through the website, and they do fantastic work in promoting awareness of Bowel cancer, and campaigning on issues relating to bowel cancer, the cancer drugs fund and many other issues relating to the disease. Let’s see if we can get a bit of dosh together this time. Maybe don’t have that latte on the way to work. Empty those coins from the car, or that jar in the kitchen. Who can do without a Christmas card this year? Anything you can think of to raise a few quid. I really am begging and I make no apology for doing so.

Now then, where were we? Before we were so rudely interrupted The longer the absence has gone on the harder it has become to rectify. If thought recognition software were available I’m sure I’d have dealt with this ages ago, but alas I haven’t and I’m left in the position now that I have to just get it over with and blurt it out. No planned lead up, fanfare, comical introduction or musical distraction. At least this way it may buy me a bit more time to work on the what happened in three or so months since I last published my inner thoughts. Oh don’t get me wrong, I’ve written them, many many times, scrapped them, gone through all the headaches, heart aches (is this a bit strong) and countless reams of paper screwed up and thrown across the studio floor. Yeah it is laying it on a bit thick, so I’ll just go for it…and here it is!

Two weeks ago I was given the not unexpected news that my disease is now regarded as being terminal. Results of a recent CT scan show further progression of the cancer and all curative treatment has ceased. Part of the problem of me updating this blog has been the constant changes both to treatment and it’s outcome, and in effect, the chemotherapy that has been so cruel to me this time, has had no beneficial effect and ceases herewith. In addition to the tumours we already knew about on my liver, and the ‘suspect’ areas on my lungs, further disease has been detected on my adrenal gland (back of kidney) right lung, new tumours on my liver, and a single tumour in the pleural layer of my left lung. It is the latter that is likely to cause me most problems and will probably prove to be the final nail. It has certainly caused me considerable chest pain for the last three months, and if nothing else, I’m pleased that it has been possible to identify the cause of that pain. Although the tumour itself may not be treatable, pain is, and for that reason I may undergo a period of radiotherapy in an attempt to relieve the symptoms. There is also the possibility of being considered suitable for inclusion on a further drugs trial, although I would emphasise, neither of these treatments is expected to perform any miracles, it is being regarded as palliative treatment only.

How long ?.. I hear you all scream. Don’t be embarrassed, it’s a natural question, it would be strange if you didn’t ask. It doesn’t mean I’m going to answer though. Anyone who has had a serious illness and comes into close contact with consultants and doctors will know they never give a straight answer, even when pushed. To be fair I have plenty of sympathy with them, it is being asked to play God and there are no rules or limits. We’re almost certainly talking in months. That could be a relatively short time, of even quite a long time depending on how you evaluate it. You get the picture. I have my targets and today they’re all still achievable. All the time I’m breathing and relatively well, I’m still alive, so let’s deal with it like that shall we.

All of a sudden I’m inundated with hospital appointments, not that I was being let off lightly before. More scans, tests, radiotherapy, this therapy that therapy, palliative team, Macmillan, district nurses…hey hold on I want to live my life ! What I’m saying is that I’m being kept busy, but I will get around to bringing my blog up to date with what happened over the summer. Glastonbury, Kendal, days out, days in the garden, gigs, concerts mini festivals, oh and a dislocated thumb. It seems inconceivable that I haven’t mentioned Glastonbury since I got back ! All will be rectified in due course.

It was not unexpected news when I got it. I’m not sure you can ever be prepared, but I knew we were reaching the end of the line when it was deemed the tumour on my liver was inoperable. Nonetheless, hearing such news throws you into a state of confusion until gradually the reality of it kicks in and you have to start to think of the practicalities of what is about to happen to you. It is a very strange situation to be in. I found it harder telling my Dad than my kids ! They were half prepared too, so no great shock to them. They have been wonderful and supportive throughout the entire progression of the cancer. My Dad on the other hand has become progressively forgetful and confused as he gets older. I see the frustration on his face as he realises he has forgotten why I am ill, and what has happened to me. But we will deal with it.

So that’s it ! I got up early on a Sunday morning and did it. I’m going to publish before I get distracted and start adding bits and pieces that are not really necessary at this moment. I know once I press publish I will feel a great sense of relief. It’s been a hard secret to keep.

I’ve calmed down, composed myself and had time to rethink my comments over how other people react to cancer. I know it’s difficult knowing what to say when confronted with other peoples illnesses. Half the time we don’t really want to know…”How are you?”, drops of the tongue far too easily sometimes. I’ve seen and heard a lot of it over the last few years, it seems that it’s far easier when someone is cured, and lets face it, more and more people are being cured of cancer. It’s not uncommon for diagnosis, treatment and cure all to occur within the same year nowadays. Better diagnosis, better treatment, improved surgery techniques and more targeted chemotherapy. It’s almost expected that they’ll recover and be back at work within months. It’s easier to say how pleased we are when this is the situation. We can openly say how strong we think they were, with their ‘battle’. How they fought, stayed strong, endured and beat the disease. It’s almost that we’re a failure if we don’t get cured, didn’t fight hard enough. When faced with something that is incurable and long lasting we don’t seem to know what to say. I include myself in that, I’ve been in the same situation and been lost for words. Sometimes I still feel like a leper (see, I don’t even feel like I’m a bona fide cancer patient) but I suppose it’s all part and parcel of having advanced cancer. In truth it’s often me that’s lost for words, what do you say when confronted with ‘oh my cat had cancer’ when someone learns of my diagnosis. Meow.

I was almost prepared for my own battle when attending my oncology appointment this week. I wasn’t prepared to continue with chemotherapy that was making me so ill. In the end the decision was taken out of my hands. I don’t know why I doubted my medical team, I’ve known them all long enough. I couldn’t have wished for a more sympathetic ear. Of course they understood what I was going through. Of course they understood how ill I was feeling, how desperate I was, how scared I was. They had no intention of letting me continue with treatment when I was suffering such a severe reaction to the chemotherapy. In a way I was perhaps a bit naïve in under estimating how it could affect me. I’d read all the paperwork, signed the consent forms, listened to all the warnings of the possible side effects, even if some of them were ‘rare’. Why should I think this one would be any different to other courses of chemotherapy I’d undergone, (even though they were different drugs) I’d sailed through them. A bit of nausea, mild diarrhoea, bit of a skin reaction, fatigue, but it was all manageable. Even having read through all the notes again, nothing could have prepared me for how ill it made me feel, and yes, I was just unlucky to have had such a severe reaction. It happens, my body was just hyper sensitive to this concoction. I left with the usual carrier bag of drugs too counteract the side effects, antibiotics, creams and ointments. My face has erupted with acne, another side effect. It’s like being a teenager again, but I’ve been warned that the risk of infection is extremely high, so I’m paranoid about hygiene, even more so than normal. I’m still awaiting results from tests looking for any further infections. They’re unlikely to identify anything, but there is a high probability that I might have picked something up when my bodies defences have been so low.

So I’ve got a month without any treatment at all (apart from the antibiotics and treatment for side effects), and then we’ll decide where we go from there. There are not many options left, but I’m far happier with the situation as it is. Quality of life is far more important than quantity. With four days left until we leave for Glastonbury I’m pleased to say I’ve started to feel better. There are still a few residual problems but nothing I can’t deal with. Lack of energy is my biggest problem, I can only manage a few minutes of doing anything strenuous without having to sit down for an hour to recover. The garden needs urgent attention but that is going to have to wait as there are more important events looming. There’s still colour, and you can’t see the weeds unless you look closely. I just don’t have the energy to do it at the moment. I’m so glad I’ve booked the electric scooter for next week. I can’t see me being able to get around without it.I have to admit that there have been many occasions over the last few weeks when I doubted if I would make Glastonbury. I’m sure there were many who knew that was what I was thinking, but I wasn’t going to admit it. I’m relived to say that all doubts have now gone and in a few days time I’ll be back in the vale of Avalon and making the most of ever second that I’m there. Last year I took a bottle of champagne to celebrate the news that scans had revealed there was no evidence of cancer remaining in my body. As we now know that didn’t last very long and I’ve since undergone a second session of surgery on my liver, only for the cancer to return for a third time, this time inoperable. They’ll be no champagne this year, probably not even any alcohol, but I will sure to be celebrating being back there. Foremost in my thoughts will be Hazel (@stinkywitch) who sadly will not be joining us this year, but I know her spirit will be there with me. How quickly things can change, and it should be a lesson to us all that we should make the most of every second we have, every moment with those we love the most and savour the good fortune we have. I wish a few more friends were there with me, I still feel guilty at being able to get tickets when they didn’t, I’ll miss you, it’s been a long time since I did Glasto without you, but I’ll be well looked after. I can honestly say I don’t remember looking forward to going as much as I am for many many years, which is saying something considering it has always been the highlight of my year. It’s never been about headline acts for me, there is so much to do and see without going anywhere near the main stages. We’ll be camping in the disabled camp site which will be a totally new experience, it’s taken me years to accept that I might need a few helpful facilities. So that’s about it, no more blogging until I get back. I’m almost organised, just a few clothes to throw into a bag, sort out music for the journey, oh and make sure I’ve got a big box of drugs and medication to take with me.

Once again, thank you to you all for the many messages I have received during the last few weeks of turmoil. We got through it in the end. I’ll be posting one more entry in the next few days which will be self explanatory, and I’ll be nominating my own candidates for the Liebster Award, so watch this space 🙂

How many times have I started with the phrase “I don’t know where to start”…? I’ve just arrived home from another stay in hospital, literally just stepped through the door. I’ve had plenty of time to think whilst lying in my hospital bed, and the blog has been foremost in my mind, only to the extent that I’m aware that everything seems to be running away from me, happening so fast that I don’t even have time to record events as they occur.So, I’ll make an effort this time if only to bring you up to date.Chemo cycle #2 went ahead last week, a 20% reduced dose In an attempt to avoid the catastrophe of #1. Nothing out of the ordinary, if there can ever be an ordinary when dealing with cancer, I slept through most of the 7 hours it took to infuse the various toxins through my body, and I slept most of the following four days, waking hourly to wring the sweat from my bedclothes. I can’t say it was nice, there’s nothing nice about chemotherapy, there are only degrees of tolerance. I could give you a blow by blow account of all the side effects, but it still wouldn’t give you any more of an idea of how awful it is. Without doubt this is the worst it has ever been, and I am seriously beginning to question whether I can continue with any more. Even the reduced dose was only barely tolerable. I have dragged myself out of bed on my knees crawling to the bathroom, with the knowledge that I’ll be doing exactlty the same thing in 10-15 minutes time. It’s not the overwhelming feeling of nausea, the hot and cold sweats, not even the aching of every bone and muscle in my body. It’s diarrhoea ! Sorry to put that thought in your mind, but it’s with me 24 hours a day. The rumbling of my colon is constant, and no matter how many loperamide or codeine tablets I throw down my neck, nothing is having any effect on it.

Are you still with me? Well done if you are, I bet you’re in the minority. So after a week of constant diarrhoea I phoned The Christie, out of pure despair. The oncology nurse was very understanding, she thought I needed to ‘come in’ but alas no beds. So she sent me to my GP, not my normal doctor, a young female who’s opening comments were ‘why have they sent you to me?’. Very reassuring. To be fair to her, she did at least phone The Christie for advice, and spoke to one of the oncology registrars who had already been briefed on my situation, and on his advice, I was admitted to my local hospital, with a list of ‘suggested lines of treatment’, which in their wisdom they chose to completely ignore. They did hook me up to a drip to replace the various electrolytes, phosphates, magnesium etc, but they did the bare minimum, and I had barely got to the hospital steps after being discharged before the diarrhoea kicked in again. I am tempted to say I am disgusted with the treatment I received, but in reality it just goes to show how far the health service needs to go to provide a basic standard service to cancer patients throughout the UK. Surely we deserve that. My treatment reflects just how little your average hospital knows about providing the right care to cancer patients. I had to let of steam when I got home, and will be ever grateful to the guys at Beating Bowel Cancer who listened to me with such understanding and care. They reminded me how close to the wind I am sailing, which is becoming spine chillingly frightening when I stop to think about it. But one thing is for sure, I am determined NOT to die from diarrhoea ! Can you imagine having that on your death certificate as cause of death? No thanks, I want something a little more glamorous.

I’m back at The Christie on Monday, and the last few weeks have convinced me I now have some difficult decisions to make. In fact they’re not that difficult at all, probably the easiest I’ve ever made, it’s just accepting the situation that has been hard. But now I understand where I am, I’m very much at ease with the situation. I’ve two weeks, no less, to get fit and ready for Glastonbury and I’m going to concentrate all my efforts on that. I can’t tell you how much I’m looking forward to it. M is coming over to help me with my ‘Glasto pile’ … nothing to do with sitting in cold fields, it’s the mess that accumilates when you select all the things you might need to survive 6 days at Glastonbury. The plan is that the pile gets smaller and smaller as the date approaches, and only a fraction of it ends up in the car. We’ll see.

A few administration notes now because I’m too lazy to send emails. The only time I seem to open the laptop now is for the blog, my phone does everything so why should I bother. Ahh….the phone is only really suitable for incredibly brief/rude email replies. Fat finger syndrome. Thank you to everyone who has gone to the trouble of messaging me with good wishes, they really do mean a lot. I seem to have more ‘cyber friends’ now than real one’s, but I am beginning to appreciate the value in that. As my disease progresses it is noticeable how many of those real one’s are dropping by the wayside. “Oh…how are you…you’re looking well…I’ve been too busy to read your blog” (not too busy to spend all your day on Facebook though). I don’t mind people not reading my blog, it’s not compulsory, but please, be honest…too busy? Those of you who remain I value so much more, and I don’t need to name names, you know who you are, and you are special. I will single one person out though, Gypsy, reading your emails have got me through some very long nights, and you really are special. Lisa, I haven’t forgotten about Liebster, just need to find the time to finalise it. And Rachel, I finally finished reading your book, and I love seeing your photos and how you are enjoying life again. Are you sure you want to marry that guy 😉